Mom is 82 and has vascular dementia. During the past three weeks she is barely eating enough to feed a bird. I brought her some soup and chicken tenders yesterday and she did eat some but only about 25%. Her blood work and labs were excellent its just she keeps getting dehydrated since she's not eating and drinking enough. Any advice? Is this a good option for mom?
Sometimes with vascular dementia or lewy body dementia or any dementia end stage means the person becomes agitated or violent. It went on the local news recently, a case in a fancy neighborhood where the husband and wife lived in memory care together to the tune of $18,000 per month. He stabbed the wife to death and now spends his final days in jail and prison, and ordered to come up with $2,000,000 in bail to go "home". Since violence or agitation of this type means end stage this person would have qualified for the hospice dignity treatments of this horrible devastating disease.
I don't mean to alarm or scare anyone or judge but I question the supports for not involving hospice to help treat this end stage as it could have gotten dealt with by clinical compassion as end of life considered normal by hospice. Instead the wife died, and the husband now spends his final days treated as an 86 year old criminal.
Some people go on palliative on and off for years, the family often finds it a relief as every medical problem like not eating or agitation gets addressed by comfort measures. Hospice will treat the whole family on the daily benefit including a chaplain who will help everyone work through the spiritual side of end of life. Read about Elizabeth Kubler Ross the swiss Psychiatrist who developed Hospice and Palliative to bring comforts to end life diseases that cause suffering for decades or years or months. Dr. Kubler Ross also researched the afterlife or spirituality around grief and death processes in the 1970's, it might help to read about this. Denial the first step of the grief process, acceptance the final step...
Hospice is intended to provide comfort care for someone that has a terminal illness.
Someone that has a life expectancy of 6 months or fewer. BUT it does not mean that a person will die within 6 month. A person can remain on Hospice as long as there is a decline. Guidelines are set by Medicare and a person is evaluated periodically.
With Hospice there will be no more trips to the ER. There will be no more invasive testing or diagnostic testing. (If testing needs to be done or if hospitalization is necessary it can be approved by Hospice.
Hospice will not "kill" a patient by over dosing with morphine or other medications. A person dies while on Hospice because they were dying anyway and they would have died with or without Hospice.
Hospice will try to keep a patient comfortable.
Hospice will have a Nurse check on your mom at least 1 time a week.
Hospice will have a CNA give mom a bath, shower or a bed bath at least 2 times a week. (the facility will no longer give a bath, shower or bed bath)
Hospice will order all the medical and personal supplies that are needed.
If you wish a Volunteer from Hospice can come visit mom each week.
And as mom reaches end of life Hospice can have a Volunteer there when you are not so that mom will not die alone.
As you can tell I am very much a proponent of Hospice.
I could not have cared for my Husband the way I did if it were not for Hospice and the amazing Team I had.
Now about mom not eating a lot or drinking.
This is part of her body shutting down.
She will not feel hunger or thirst like you or I do.
To give her fluids or food can cause her pain and create problems. As much as you might think a feeding tube or IV's will help they will not so I urge you to resist that thought if it enters your mind.
Talk to the person from Hospice.
Listen with an open heart and mind.
((hugs)) This is difficult no matter what you decide.
It's sad to see Mom like that but she no longer is as active as before and that's why there's loss of appetite. I was bringing my mom all her favorite foods too, ice-cream and pizza and always had peanut butter and crackers. The mind is shutting down along with the body so Hospice is going to help her out immensely.
When I, as POA/health directive, sat down with Hospice, they told me not to stop her medical premiums. That was just incase she went off Hospice her medical insurance would be active. It's not likely but if she did and needed an operation or something that would be so costly without insurance. I know during Hospice, I had her sent to the hospital when she contracted C19 and I believe her premiums covered that.
Don't think of what it's doing to you, think of what it's doing for her. This is more people looking in on her with every desire to make her last days more relaxed.
To sustain life or ensure a longer life, have a doctor surgically place a tube into her stomach for fluids and nutrition.
To focus on quality of life and not worry about "how much" life she has left, allow hospice care. Hospice staff work to help the client be as comfortable and engaged with family and friends as possible. They DO NOT shorten a person's lifespan. They can order and give medications for pain/discomfort. They will not force clients to eat or drink if they do not wish to. They will maintain hygiene, toileting, turning... to keep the person comfortable.
I would recommend that you talk with hospice care to find out what services they would provide your mother. They are known for being a very kind and caring group of people. You can then decide on whether or not you wish to use their services.
I think it is really important to understand what your palliative team's expectations and goals are during your mom's time in the program and importantly if they match your mothers wishes. If palliative for example wouldn't be willing to treat with antibiotics for something like a uti or chest cold that may come up and she dies from this as a result is this what your mom would have wanted or leave you feeling like she was denied basic care. No judgement either way, it really is about advocating for what your mom would have wanted.
Also ask them what their plan is for end of life care and what meds they use during this time and understand how those meds affect your mom's consciousness and speed of passing. I think it is important to understand what they would do so your on the same page and not surprised by anything.
In the intern, have you tried ensure, or boost drinks? Sometimes with vascular dementia we were told the taste of food can change and you have to explore foods that they usually don't like. having something that tastes a bit sweet or like a milkshake may go over well.
I wish you and your family peace during this very difficult time, I know it isn't easy but know that your mom will be so grateful for all you have done and do for her during these days.
Best Wishes to you in getting through the coming days, weeks, and months. It is sad and difficult to go through a beloved parent’s decline no matter how much help and support there is.
If the word ‘death’ scares you, perhaps you should talk to a counselor or a church member. Try to accept that ‘death’ is coming, and move your thoughts to what your own life will be like afterwards. This stage will NOT last forever. Best wishes to you and to M, at this difficult time. Yours Margaret
If you have a good hospice agency involved you will be very grateful for all their help and knowledge. Plus it will be extra sets of eyes on her in her facility.
It's a win win for all involved.
I'm sorry that your mom is suffering from having vascular dementia, and I know that you surely don't want her to suffer when she dies.
So let hospice come to moms facility and do an assessment, ask all the questions you want and then take things from there.
Best wishes in doing what is best for your mom.
I used Hospice at home with my Mom who had vascular dementia. They were nice. The primary care would still be with the same parties, Hospice is just a small added comfort.
Ssame with my dad in 2015.
There are folks who are hospice for 2 years. Some graduate off of hospice care if they improve.
So don't be deathly afraid of the services they provide. Make sure to ask questions up front and know that mom will no longer be dragged to the hospital to be poked and prodded while on hospice. My folks were very relieved to get off of THAT rollercoaster and just be left in peace.
Best of luck with a difficult situation.
Hospice means that your mom is dying and that her medical team recognizes that and wishes to make that dying more comfortable for her.
You are asking us if dying is a good option for your mother?
That is something you will not discuss with your mother's doctors and with Hospice.
Dying isn't an option. It is an inevitability. And it seems that your mother's doctors are recognizing that she is now dying.
You do not mention who the POA or Guardian or "decision maker as next of kin" is for your mother. With her dementia she isn't capable of making this decision. But it is not the JOB or the doctor or the nursing home to make this decision, nor of Hospice itself. It is up to your mother if capable, and if not to the POA, the guardian or the next of kin, who it is assumed would know what care your mother wishes to have for her last days on earth.
Do know that Hospice gives medications for comfort, for prevention of anxiety or agitation, and that these medications often CAN and often DO speed death by some moments, hours, days, even weeks. Do you honestly at this point see a point in the suffering your mother is enduring daily?
I wish you the best. I am so sorry. But it is very clear that you know that putting Hospice in place means that it is recognized that your mother is dying and is expected to die within the next six months. That is the law. And again, dying isn't an option. It is a fact. An inevitability. Whether it is speeded by some few days or weeks isn't really the point when there is suffering.